Sunday, August 10, 2014

An interesting chat with Benjamin

I was recently contacted by a member of the group named Benjamin. He was interested in me because of my blog entries about the Oculus Rift. We talked for quite a while on Facebook about vision therapy and strabismus. I decided that I wanted to have a voice chat with him about it. So we talked for around an hour today. He's quite an interesting guy with a pretty fascinating story.

A lot of the strabs (we really need a better word) that I've met through the group have congenital strabismus--they've always had it. Or in the case of Emily she gradually developed strabismus. At one point in her life, the eye just started pulling out, which she says is a trait which runs in the family. Benjamin, on the other hand, got strabismus via LASIK surgery.

LASIK is surgery which uses a laser to reshape the cornea--the non-accommodating outer lens of the eye which provides most of the eye's optical power. One of the biggest and most important lessons that I've learned about in my vision therapy journey is that of the accommodation reflex--the connection between accommodation and eye vergence. As the eyes diverge, the lens gets thinner. As the eyes converge, the lens gets thicker--automatically--and overriding this reflex is difficult. This reflex is part of what is responsible for accommodative esotropia. If one has an accommodation insufficiency, in particular, hyperopia, the result can be strabismus. This is why eye doctors usually first try to treat strabismus--often successfully--with spectacles in order to correct refraction, and thus restore alignment.

That's what appears to have happened with Benjamin. In a sense, the surgery was a success. His vision acuity greatly improved with the surgery; however, it was at the cost of a high degree of eye turn-in--I think he said 30 diopters. Interestingly he said that he never had diplopia, which means that he must have learned how to suppress extremely quickly. So he got the acuity, but he also got severely misaligned eyes, and the loss of stereoscopic vision--not to mention terrible headaches, eye strain, and the social problems which come with strabismus. This LASIK-induced strabismus is actually something I mentioned a few entries ago. It is a risk. The visual system is complicated and one can never know who is going to respond poorly to a sudden change in its refraction.

This all happened when he was 25. He's now 39, turning 40 this week. He said that the timing was terrible and that the surgery ruined his life. With his severely downgraded vision everything was much more difficult--reading, studying, working. He said that his new cosmesis caused people to turn him down for jobs and take him less seriously. He mentioned that if he was at a party he could be talking with someone for hours outside with his sunglasses on. Then when it got dark and people would go inside, he would be talking to the same person, but the person would be very distracted by the eye misalignment and awkwardness would ensue. He said that the strabismus put his entire life on hold for 15 years.

The good news, however, is that he learned about vision therapy. He read Fixing My Gaze. He saw a few vision therapists and learned a few things from them. But he quit since it's so expensive--around $125 for an hour session. Vision therapists are largely reserved for the affluent. Plus, he got the impression, as I did, that seeing vision therapists is mostly a waste of time and money. But it doesn't seem like it was a complete waste, because he now has a sort of protocol that he's following which he says is fixing his vision quite rapidly. He says that his eye fatigue and cosmesis are both improving every day. He said that he went from a 30 diopter deviation to 10 diopters--which is a tremendous difference. His vision is improving in all aspects.

He said that he's using glasses with stick-on prism lenses to correct the perceived visual misalignment so that he can get fusion. Initially it was a very large diopter prism to accommodate for his large deviation. Then, like me, he would invent exercises. For instance, he watches TV and practices doing saccadic movements, tracing the outlines of actors' bodies or faces. By doing this, and by giving the brain correct corresponding input for both eyes, he's rebuilding the wiring--reinforcing old forgotten neural pathways--renovating them, if you will. By restoring the pathways, the brain then naturally wants use them with everyday activity, and the brain gets the information that Benjamin is training it to want by aligning the eyes. The consequence of the brain aligning the eyes is that over time he needs less prism refraction in his vision therapy exercises. And that's indeed what's happening. I guess you could say that he's using the sensory fusion approach to vision therapy and in his case it's very effective.

It looks like he's going to achieve his goal of completely restoring his vision. And funny enough, when he does, his vision may be better than it ever was, because he's going to have the improved acuity which was the whole point of the LASIK surgery, with normal stereo function--something he never had together.

Even though I've only very recently got to know Benjamin, it makes me extremely happy to see him succeed in this way. I can partly relate with him. Unlike him, I had congenital stereoblindness (partial stereoblindness now). I adapted very well to strabismus. Aside from always having performed poorly at coordinated sports and being somewhat clumsy I was fine. Strabismus had a much greater negative impact on Ben. When he says that the LASIK surgery 'ruined my life' I don't think he's being dramatic. I think he's being honest. Plus, it's consistent with what I know about other people who have strabismus. For some people it is a truly hellish condition. I've heard several different people say that they have contemplated suicide as a means of escaping from the symptoms. It can be that bad. To see him conquering this problem that plagued him for 15 years is just... well let's say that it makes me very, very, very, very happy to put it inarticulately.

I asked him whether he thinks the protocol he uses can be applied to others. He said that thinks it definitely can. Heh, he said 'it's not rocket science'. I think that's true. I do think a lot of people have the ability to wrap their heads around how the vision therapy works and how the visual system works enough in order to rehabilitate their own vision. Of course there are risks involved in doing vision therapy on your own, and you're going to hear the screeching of vision therapists 'You don't know what you're doing! You need us!!!'. Of course. It's simple self-preservation. They wouldn't be good organisms if they didn't take that stance. People like myself and Ben accept the risks involved in undergoing vision rehabilitation. We're fixing our own vision without going broke (as opposed to the year that I spent seeing a vision therapist, going broke, and not making progress).

As we talked, I realized that Ben knows quite a lot about vision therapy. There were some holes in his knowledge. He didn't seem to know how LASIK caused his strabismus. I told him that I think the changed refraction of his cornea caused the esotropia via the accommodation reflex, which he didn't seem to know about. That kind of surprised me. But one doesn't need perfect knowledge in order to learn to change a system to one's will. We both work in IT as engineers so we know this firsthand. Overall I get the impression that he is more sophisticated than me. I was impressed by how much he seemed to know. I told him this and he responded 'I didn't have a choice. I simply had to learn all of this. Everything else was on hold.'.

There's another guy in the group named Keith who has a deviation which very strongly resembles Ben's before he hit upon his protocol and became proficient at vision therapy. Ben explained the protocol to Keith. We're talking about documenting it so that it becomes accessible to the group.

We're both very interested in how technology can be used for vision rehabilitation. We talked a bit about the Oculus Rift and its potential to cure strabismus for a ton of people. We talked about why it seems to produce powerful stereo effects even for people who have stereoblindness. There's something about it that encourages the brain to use both eyes--probably the fact that it's so up close, and your lens is at its thickest, perhaps freeing up energy to allow the use of both eyes. Who knows. There's an article about it here.
http://www.vognetwork.com/rifting-to-a-new-reality/118/I-Am-Stereoblind-But-The-Oculus-Rift-Is-My-Corrective-Lens/

Anyway, it was great to talk with Ben and hear about his story. I'm sure there will be more mention of him in later entries as he approaches the finishing line. It was great talking with you, Ben!

How is the protocol documenting proceeding? Do you foresee publishing an early draft soon. It could be beneficial to many while likely opening up a meaningful discussion. Thanks, always, for sharing your knowledge/experiences.